The youngest of five, two-year-old Emmanuel (Em for short) is doted on by his brothers and sisters. While non-verbal and non-mobile, Em recognises his siblings and lights up whenever they are around!
Em was born with a rare genetic condition called OTC deficiency - a disease that causes high levels of toxic ammonia to accumulate in the blood. The condition left him with an acute brain injury resulting in Cerebral palsy.
Mum Teresa recalls her shock seeing her tiny baby so sick.
"Em was two days old when his temperature dropped, he started vomiting and his little body went limp. Our lives were shattered in that instant," she said.
Since then, the family's life has been filled with the fear and uncertainty of hospital and ongoing treatment. OTC meant Em’s liver wasn't working properly because it was missing an enzyme. It cannot be cured so at just seven months old, Em underwent liver transplant surgery.
Juggling the demands of Em's condition with four other children to care for is unrelenting for Teresa and her husband Louie.
"Louie and I no longer have time together as one of us needs to be with Em and we're not able to give our other children as much time and attention as we'd like," Teresa says. "We can no longer be spontaneous; everything has to be planned and well thought through. Simply getting out of the house is a challenge."
Thankfully, Starlight helps bring the family vital moments of respite. Siblings Cecilia 11, George 9, Lucia 7, and Tobias 5 love going to the Starlight Express Room every time they visit Em in hospital.
"Starlight has had an incredible impact on our kids, making hospital a fun experience instead of a sad one. Starlight helps distract them from what their little brother is going through," Louie said.
Em is a happy little toddler who adores Elmo from Sesame Street. He loves walks outside and taking in the excitement of everything going on around him. Whenever he is well enough his mum and dad take him to the Starlight Express Room where Captain Starlight's fun and energy helps lift the family's mood.
"Happiness, laughter and having fun, make our time in hospital much more enjoyable and I think it helps with Em's recovery," Teresa said.
When Em had to be in hospital at Christmas, Starlight helped bring joy to the family at such a special time of year. Despite the sadness of not being at home as a family, Teresa said they still enjoyed the spirit of the festive season with surprise gifts, decorations and the fun of Captain Starlight.
"The Captains were singing carols and just being their silly selves with the kids. It helped boost our mood and distracted us from the reality of spending Christmas in hospital" she said.
Teresa and Louie are so thankful to Starlight supporters for helping the family cope with the ongoing strain of hospital.
"Thank you for making a very big difference in our lives. Starlight gives our family something positive to look forward to and a break from the monotony of being in hospital. We hang onto those precious moments together."
